weird case of epilepsy

[laufy123]

here is my history: i am 28 years old and was hit by a car when i was 12 years old. during one of the EEG's they told me I had abnormal brain waves but it never manifested itself into anything. then 14 years later i was laying my bed and i started getting this feeling in my head like I had alot of "bottled up energy" and the only way i could release is was to seize. I went to a neurologist who did a 48 hour eeg and he said i had abnormal brain waves( prob the same ones that were found when i was 12) and he put me on keppra. when i asked him why it took so long for these abnormal waves to manifest itself he said " i dont know, it could happen" but here is where my issue lies with my diagnosis and what no neurologist could answer:

1) why did these abnormal brain waves turn into epilepsy all of a sudden
2) i have never had a full seizure. during any of them i was concious the whole time and was aware of what was going on. for example during the last one i had i told myself to open my eyes and i did and "saw" my eyes moving back and forth. i also moved my arm
3) the only symptoms i have are a "numbness" feeling
4) these seizures only happen when i am sleeping and laying on my back
5) since i am aware of what is going on, when i get that "aura" that happens before someone gets a seziure i cant stop it by waking up

no doctor i have been to has been able to explain these things: how am i able to stay consious through them and tell myself to do things, why they only happen to me in certain positions, how can this be related to my accident so long ago but the most confusing question is ....how am i able to stop them?

please help me.....i need a correct diagnosis

[jazz1717]

i was put on keppra when i was 14 they had me try other medications first. and i am now 19 they say that the chances of me getting off of them grow slimer as i get older, but they want to wait till im done with school to try and lower my dosages because otherwise i wont be able to drive to and from school. And they figured that the right lower part of my brain isnt being used i cant remember which part exactly sorry. They figured that out because when i was in the hospital i had an episode and the electric burst started in that part of my brain. The rest of the time though there was no monitoring there.

[laufy123]

if you dont mind I am very interested to hear more about  the part of your brain that is not being used. how did they figure that out? im only wondering because we all have parts of our brain that our not being used, so why would that cause seizures? but it seems like you have a similar case to mine....have you been on keppra since you were 12? how old are you now and do the doctors think there is any chance you will get off of them?

i would appreciate your help...thank you so much

[jazz1717]

Well i can tell you that you have similar things in common with my epilepsy here is a little background on mine, they started when i was really young and nobody knew why i dint get diagnosed till i was 12. They say that i have a part of my brain that is not being used and so it decides to make it's own use of itself. That is why i have a seizure although like you they could'nt tell me why i was able to understand everything that was going on, why i know when im going to have one because i can start to feel it work its way up my left leg (where it always starts), and lastly they couldn't tell me why the seizures would only occur when i woke up in the morning from sleeping. All of these factors are abnormal factors that no neurologist coujld explain for me either. Im not sure what to tell you but im assuming you got the right diagnosis since keppra has done wonders for me. But remember not all Dr.'s can have all the awnsers we are all just human after all.

[laufy123]

is there a forum online that has doctors on it?

[teddybears4ever2]

Well no one here can give you a diagnosis, because we are not doctors.  I will, however, tell you that many things are not known about this disease.  The whys and hows are a bit of a mystery. I can tell you that you are just going to have to think more about what position you are in.  The only bad thing about this, is that it may change.  I wish I had more to offer you, but all I can offer you is that not a lot is known about seizures.